A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side –

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering. Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.

Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.

But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?

When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?

I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.

The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.

Getting back to medicine –

Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?

My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.

For this week, I refer my readers to the generous, telling blog of Lisa Bonchek Adams, a woman who is 44 years old and lives with Stage 4 breast cancer. She has spent the past week holding firm at the center of a media-storm, while hospitalized.

I know Lisa and admire her for her candor. It takes courage to share what it’s like, as she does – good days and bad. Yes, her story is imperfect. But so is everyone’s.

I see beauty in her story, unedited.

Lisa’s blog and tweets are not filtered by a journalist, nor structured by a doctor to fit into an HPI or EHR. She writes directly to her readers. If you insist on literature, you might consider Lisa’s work as a splintered and intensely personal longform narrative.

The blog is kind of like a thick, old-style paper chart of a complex patient. A doctor, in trying to understand a person’s course, might read all of it, or flip through most, or just cut to the chase and scan a few recent lines and lab values. It takes time to pour through a detailed account, to appreciate what is really going on, to understand what the notes reflect.

It could be that there is no “answer,” that Lisa’s story is, plainly, what it is – about her life. Not everything needs be explained. Why peg a person’s condition? Except maybe if you’re a doctor and she’s asking you for treatment or advice.

Lisa is not asking for a diagnosis. She has a team of doctors. She is just letting you know what it’s like to be in her circumstances, in case you’re interested, or care.

I learn a lot from Lisa. I am glad that she is alive and tweeting, as she chooses.

Yesterday I learned that a woman I know slightly, a journalist, has Stage 4 lung cancer. Debra Sherman is a reporter for Reuters and began a blog, Cancer in Context. It’s a moving start of what I hope is a long journey.

What struck me is how Debra describes crossing a line, a bit the way I felt when I found out I had breast cancer. She writes:

I have been writing about medical technology and healthcare for more than a decade. I’ve covered the major medical meetings, including the big one on cancer. I’ve written stories about new cancer drugs and treatments…I wrote those stories objectively and never imagined any would ever apply to me.

She’s shifted from what you might call a “straight” reporter to an i-reporter journalist. And although it’s true that Debra may be less objective than some other writers on the subject, she’s already knowledgeable – through her prior work – on many of the relevant terms and issues. Much of what she knows already, vocabulary included, may allow her to make more informed decisions. It’s possible it may enable her to write in a way that helps readers more than ever.

Earth, from space (NASA image, Wiki-commons

I wish her the best with her column, and with her health ahead.

The bigger issue, of which the story reminds me, is that we’re living among too many young and middle-aged people who have cancer. Every day I read or hear of another case among my neighbors, a friend, a blog. Each reminds me of the need for research, better drugs, and greater knowledge of why so many tumor types – including lung cancer in women who haven’t smoked much, and breast cancer in young women – are on the rise.

The ASCO meeting, where believe me I wish I could be but can’t now, offers a bright picture for targeted drugs, genomics, novel immunotherapy and better data access and analyses through a huge new platform called CancerLinQ, All good. Great, really.

In thinking about each new case in my “world” – if I could pick a field for future investigation that might lead to insight on cancer’s causes and, ultimately, reduce the cancer burden 30 and 50 years from now, I might choose the tiny, under-funded area of environmental oncology

That’s a tough field. Most oncologists want to work with patients. Researchers want to publish papers. Cause-and-effect is hard to demonstrate, especially when most of the data is untenable and you’re up against businesses, politics and people who, understandably, don’t recall precisely what they ingested years ago. But to stop cancer from happening so much, that’s where the money is. IMO, nothing more.

First, the study’s flawed from a methodological standpoint: The investigators, based at the CDC, used data from a 2009 DocStyles survey of 1750 primary care physicians, pediatricians, obstetrician/gynecologists, and dermatologists in the U.S. According to the paper, this sample was drawn from the Epocrates Honors Panel. So they’re a technically-oriented bunch. Besides, the survey didn’t include oncologists, cardiologists, neurologists, radiologists or surgeons, among other physician-types.

Red flag: “Physicians who completed the survey were paid an honorarium of US $55–US$95.” This tells me that the doctors who participated have time on their hands and could use an extra $75 or so; it’s unlikely they’ve got thriving practices.

Blogging was defined as “posting commentary, descriptions of events, or other material such as graphics or video on a website which serves as an online journal.” The featured result was that 13% of the paid, internet-using physicians in the study said they blogged in the prior six months. The 226 bloggers tended to be young and male.

Seriously –

It’s unlikely that 1 in 8 doctors in the U.S. are blogging. I say this not just because the study’s flawed, but because almost all the physicians I know and trust with my health care don’t have time to write, unless they’re taking notes for a book, or do so as a hobby. They might, for example, blog about video games, or vegan recipes. But as far as their work is concerned, most non-shift doctors are lucky to see and examine all their patients, finish their notes and answer patients’ phone calls and get home by 11 PM.

In my view as a patient, if you’re a doctor and you blog for fun, there’s no issue. Blog away, and mind HIPPA. But if you’ve got anything else to do with your time, like –

reading medical and scientific literature

enjoying time with friends, family and others in your community

resting

exercising

spending one extra minute with each of your patients

re-checking primary data and calculations before publishing research

watching a movie

having lunch with colleagues

gardening

bowling, if that’s your thing…

<insert your passion>

– live your life! Spend time wisely.

—

I want my doctors to be happy, up-to-date, and rested.

Besides, what’s the point of so many busy, needed health professionals writing about their experiences or opinions, except if it’s for their own satisfaction?

Is a question I ask myself almost every day. When I started this blog, it was partly a response to what I perceived an unbalanced attack on the value of breast cancer screening by the mainstream news outlets. Why it’s continued is, mainly, that I find it liberating and, in a strange way, fun. As I’m no longer practicing, this wide-open world of shared facts, some questionable, and new ideas keeps me alert and, maybe, in-touch.

But if that’s what doctors’ blogs are about, why don’t we just call it PR?

As I’ve said before, I do see value in academics blogging, especially if they’re not afraid to question, and don’t simply kiss up to authors who’ve published articles in major journals. I can see how Twitter from a trusted source like the CDC could be a rapid way to disseminate information about a new viral strain, an urgent need for blood donors, or a real public health emergency.

But for most practicing physicians, I just don’t see how they have time for it. Unless it’s like a hobby, or better – an open notebook – a way of recording your thoughts on what you’ve seen and learned in the day. That kind of blog can be great, even useful, for patients and other docs. The main thing is that the purpose of physicians’ and hospitals’ websites or blogs should be clear.

Recently I saw a tweet by @jamierauscher about whether she thinks to inform her docs about her use of social media. That’s a separate topic.

There’s a music video, Don’t Touch Me that’s annoying but depressingly right on how some women feel in menopause – a frequent and under-discussed aspect of chemo or hormonal therapy for BC, followed by a grounded and unusually frank discussion about what happens to women after cancer treatment, menopause and sex.

Brenda’s right; none of this was included in my med school curriculum or oncology fellowship. Although, in fairness and quite seriously, this was a subject on mine and some other oncologists’ radar long ago. Cancer treatments can have lasting effects on sexuality in men and women.

My fingers stopped this morning for a while when I came upon a reference to @whymommy. Last thing I read about her condition, she was at home having a tough but cozy Thanksgiving at home. Now she’s in the hospital and in her words, OK.

Susan is a woman in her 30s with metastatic breast cancer. People, including me, have described Susan as an astrophysicist, mom, wife… But the main thing is she’s a person.

A post in yesterday’s Well column, about coverage of breast cancer by the media, focused on the first-person narrative of NBC’s Andrea Mitchell. Journalist Tara Parker-Pope writes:

Her announcement has generated much discussion in the blogosphere, including an analysis by Gary Schwitzer, publisher of HealthNewsReview.org, who writes that Ms. Mitchell made some missteps in discussing her cancer.

The Timescolumn goes on to consider what was said, and how it might have been said better, and I agree with much of it. But mainly it’s a meta discussion, journalists talking about how other journalists consider breast cancer facts, figures and narratives.

Buried deep is this number, that according to the NCI, one in 69, or for the sake of simplicity – approximately 1 in 70 – women in the U.S. will receive a diagnosis of BC in her forties. That is an astonishingly enormous proportion of women under 50 years affected by a devastating disease.